I noted that Jet has been asked to speak at the Nottingham INFODay next Saturday giving an account of patient experience and all well and good, I am sure she will give a good account of herself and her experiences.
Perhaps campaigning is not seen as a function of this forum but there is a small part of me that thinks our combined experience. both individually and collectively, could or should be recognised and used. I am sure however that all who visit here, either as active contributors or as silent observers, have learned an enormous amount about the disease, its processes and procedures, the differing approaches of different hospitals and health authorities and more than a little nous in how to deal with the medics who conduct and control our treatment.
Put it this way… imagine this forum did not exist… that MUK was an information only site or a site with an interactive phone line, as now but with no facility for discussion, debate or exchange of information and experience. Where do you think you would be with regard to knowledge and information about MM and all the processes and procedures we have to go through on our journey? I don't really have to ask the question do I ? I think it would be a given that each one of us would be much poorer in terms of how to navigate through the jungle of ifs, whats, wheres and whens.
Yes I believe that this forum has as much to do with supporting each other as with guiding and acting as a mixture between a library and a signpost… but perhaps there should be some semi-formal recognition of the forum and the sum of its experience and its mothership, the MUK.
If MUK and NICE and any other organisation connected to MM should go seeking advices or queries, suggestions or recommendations regarding the experience of MM patients and carers then I would have thought that this forum would, or rather should, be the natural first stop for such dialogue.
Its far too late for me to start campaigning for our voice to be recognised and heard… but perhaps there are some of the new generation who might want to raise the question.
Any thoughts?
Dai.
